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Author
Topic: Every one is allowed a whiny post.... :) (Read 2852 times)

Hey Everyone! Abso here, first Happy Mothers Day to all the moms, and single dads. Ok, here's the whining. I got my blood tests all back for my 2nd month on meds, and these are my results:4/2-CD4 688 38% and VL 1,6005/1-CD4 592 42% and VL 336I was SO upset, for days because I wasn't UD yet, not even close yet my doctors said "2 months max and you'll be UD" Here I was entering month 3 and not even knocking on the door of UD, and my CD4 had dropped! Although, my percentage went up it was not up by much. Whats been bugging me the most is that i'm coming to reality on a few things. I read this site daily, and I mean MULTIPLE times a day and there's someones signature that says "AIDS isn't for sissys" and every time I read it I wonder to myself, am I a sissy? Can I handle this?

It comes to mind often, now granted I would never ever do anything suicidal, ever. I had a cousin do that, he was like a son to my mom and it tore her apart for years, but I feel like the reality is hitting me a bit more lately, the stress is getting to me too. I've never had this many palpitations going on, according to doctor they're all anxiety induced and I need to not worry about them, but I am scared of having a heart attack at 24! I've been heavy my whole life, although in the last year i've lost a lot, almost 70lbs. When I was DX'd I blamed the HIV for the weight loss, and stopped eating healthy, so now I've got to get back on that train. (PS:I know my thoughts are scattered in this post) I feel like my anxiety is getting the best of me, and even though I just started Buspar, i'm afraid of ending up taking 50 pills a day. I've always said "I'm not afraid of death, when its my time its my time" but now, having it more as a reality, I have to say i'm scared. My biggest fears are Heart Attacks, My parents having to bury me, death itself, the unknown, the likelihood of the cancers for us, etc.

I've started seeing a psychiatrist, I do my routine tests, etc. But how do people live with the stuff that goes on, I mean, I cant say I ever had shooting pains in my foot that last a few seconds and then go away, or tingling over my body sometimes, (all tests show liver and kidneys doing fine) I've always been 100% open with my family, we talked about everything but now I feel like i'm 2 different people. I HATE being at breakfast with them and when no one is looking sneaking my pill out from my pocket and taking it, or worrying "Is this enough calories?" I think the thing that bugs me the most, is I feel like it hasn't hit me enough, I haven't cried, I haven't even felt sad. I was angry, I was worried, anxios, etc, but not sad, I dont know how to explain it, what about you guys? How do you feel? I'm approaching my 6 month mark since date of infection and all I can do is sit here and think, How much damage has it already done? Will I see 30? 40? 50? Hell, will I possibly see a cure?

I'm sorry for the ranting, even if it's virtual you guys are awesome people and friends that have a special place in my heart. Thanks for all you guys do, especially Irisheyes, I have to say he's kept me going, and we make each other laugh, The Bible says to give thanks in everything, well, I give God thanks for introducing me all to you, my current team of doctors, and my 1 friend who does know.

Any advice, or words of wisdom appreciated. Thanks you guys, I hope to see you at AMG!

Well I live in Europe so while many are sleeping, I'll be the first to respond.Please try to calm down about your progress on HAART. 336 is fine! A while ago that would be undetectable. It often takes a few months for the last couple hundred to go. Trust on this, your combo is doing a good job. CD4 - don't worry about variations here. Up and down by the hours, days. Its trends over years, now. Did I understand correctly, your family - the people you live with, don't know? Who knows? It does help to have a circle of flesh-and-blood people who know, not just us o the Forum. How long were you HIV+ before you started treatment? If you are so worried about "the damage it has done" - how is you digestion, for example, now. Good healthy poos? You've taken the right steps - starting treatment and from a good point, not some crisis point. Really the impact should be quite low and manageable over the years.

You are having rolling ruminative thoughts about pill burdens, life expectancy, that don't jell with current predictions of the outcomes.. You are young and there are plenty of even better medical developments on the way. As it is, with present treatment, they are estimating near normal lifespans. I hope this helps calm you. Have a good day, I have to get back to work now.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Hi Abso,What you're feeling is completely, completely normal. Even though a lot of people know that if someone is infected today and diagnosed early, they will most likely live out a normal life span, there's still that "fear" about HIV killing people. And we can internalize it, no doubt.

But, your viral load is going down beautifully, your Cd4's are fine. The most important number to watch right now is your viral load. The fact that it's going down means your treatment is working. Cd4's vary all the time, so don't be concerned about that at all.

Your family knows you're HIV+, or no? You said you've been completely honest with them, yet you say you're sneaking your pill, so I'm confused? Are you still working, do you have a social group of friends who know your diagnosis? Or one good friend? It does help to talk to someone face-to-face, though I know with some people, they can be hesitant to talk to anyone else until they are completely comfortable. So, if we are the only ones who know, please continue to come back as often as needed.

Good luck; you're doing very well.

Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I was SO upset, for days because I wasn't UD yet, not even close yet my doctors said "2 months max and you'll be UD" Here I was entering month 3 and not even knocking on the door of UD, and my CD4 had dropped! Although, my percentage went up it was not up by much.

UD took me year...Our local guidelines is that you should pass below 400 at month 3 which you did% 38 to 42 increase is a 4 point increase, i.e. 10% (of the %) . Considering that % are fairly stable, this is a good increase (albeit without much clinical use)Eric

Getting your VL from over 104,000 to just over 300 in 2 months is phenomenal. It took Mini nearly 2 years to get down to u/d which, at that time, was under 500 (you're there!). As Mecch already pointed out, CD4s fluctuate. What you need to look at is your trend over time. For a while Mini's was pretty stable, only a few higher or lower each lab. Over the last few years, though, it has changed. Now it trends down for 3 or 4 labs, then takes a jump up, trends down for 3 or 4 labs, then takes another jump. Not sure why, but that's just how her virus rolls. When it first started to drop, I was in a panic. Now we just watch that the trend down doesn't get too low and wait for the jump. Things may change again, who knows.

I'd say your mixed feelings are pretty normal. I went into this numb auto-pilot for quite a few months after Mini's dx. I believe that your anxiety, fear, and uncertainty are manifestations of your sorrow even if you don't define them as "sadness". I'm glad to see you are seeking professional help to get your emotions sorted out.

I believe it was Ben Franklin who said, "I feared many things, most of which never happened." Be grateful for the healthy days you are having. Nothing says that they won't continue for many years to come. If that changes, deal with it when it happens.

I have found these forums to be a huge source of support and honest answers. However, there is nothing like a flesh and blood hug or an encouraging word over a cup of tea when things get crazy. When Mini was first dx'd, we circled the wagons tightly around her. As we've moved through her journey and began to trust, that circle has opened and grown bigger. We are the better for it. I implore you to surround yourself with people who will rejoice in your good days and love you through the bad.

"Some people stand by you in your darkest hour, while others walk away; only a select few march towards you and become even closer friends." (Jeffery Archer)

Let me address that.I am working on one issue and therefore not fully ready. At this point I have collected a bunch of lit. including detailed analysis. I'll post in full when I am ready , but the take home lesson is:

HIVers(smokers and non-smokers combined) : more viral infection related cancers (HPV, EBV) and more non viral originating cancers (lung, colon...) than general population

HIVers(smokers only) : more viral infection related cancers (HPV, EBV) and more non viral originating cancers than general population

HIVers(non-smokers only) : more viral infection related cancers (HPV, EBV) BUT NOT more non viral originating cancers than general population

Swiss Cohort analysis of a subset reduced to Non-smoker HIVers : number of cancers : none

If you do not smoke, not subject to second hand smoke, there is no reason to worry

Learning status, mind-blowing.Absorbing and digesting the miriad of information, overwhelming.Multiple doctor appointments and blood draws, tiring.Insurance and assistance logistics, like a military maneuverStarting and adhearing to the medications, life changing.

As we all know we accept diagnosis and progress in our own specific way.

You and I (yes I is correct) have accepted and progressed in polar opposite ways.

As stated in my very first (and lengthy) post, I accepted diagnosis immediately and moved on regardless.I'm definitely not a numbers person, I absorb what may relate to me but usually it's in one ear and out the other.

An example to other members about my blood results:

Last Friday am I had draw and received result that afternoon.

I have no clue what BUN and GFR are, as for potassium, sodium, chloride, albumin, AST and ALT, ought I care.

I promptly forwarded to my personal PA Abso.

It no doubt it brought a smile to his face.Someone else's numbers to compare and contrast and drool over.It certainly brightened his day though he did point out there was no VL result.

I hadn't even thought to look for it, even though it was expected proir to doc appointment today Monday.

That sums up my interest in all the waffle associated with and surrounding my HIV positive status.

To sum it up, you're a likable old fart, no doubt we'll be friends for ever, and I'm glad to add a little humour to your day and visa versa.

@Irish, you're such a dork, and yes i'm sending you a text right now calling you horrible names. Lol! Life long friends? Well, fine, I suppose :p Thanks Lad. LOL now for the people that matter....-MECCH- I'm staying pretty calm (totally lying here) I'm a lot more calm then I was a few days ago, thanks to Irish slapping me around a bit over the phone, haha. I learned about CD4's being up and down, plus I had just had a minor surgery before tests, so stressed, tired, etc i'm sure added to it being lower. No, my family does not know, not even the slightest clue. I have 4 people I've told 2 moved away, 1 is my boss who has been an AMAZING support person, and 1 texts me daily to make sure i'm ok, and that I've taken my pill. I was infected 12/18/2013 and DX'd 2/4/2014 so basically, I found out really quick. So I was 3 months + for 3 months before treatment. Yes, very healthy poos. As stated my biggest fear is my parents having to bury me from this. But i'm slowly getting over this fear.

-BT65 What I hate about what doctors say is the words "Most Likely" as it was "Most Likely" that I'd never get infected, but I did, it was "Most Likely" my Grandmother didn't have lung cancer in 96' but she did, it was "Most Likely" my cousin would "work through" his depression he committed suicide. Anyways, I just hate those words, lol. Yeah, I have a thing about internalizing things, compartmentalizing them, overanalyzing them, etc. Nope, family has no idea. I thought I said we've always been completely honest, until now, but hey that haven't asked and I haven't told. I work-A LOT 50-60 hour weeks I've never met someone besides Irish who works as much as I do. My social group of "friends" that know are on here, and nobody really talks to me yet on here. I suppose I need to quit just reading posts and become more active, but i'm still learning so I usually post in the I just tested poz, or I just started meds sections. One good friend does know, and she's been amazing. I check the site way way to often, according to Irish, haha. But hey, how else am I going to learn.

-MinisMom I was SO happy to see you post on my thread, I was recently reading all about Mini and the amazing support she's had from everyone, you're one hell of a good mom. Happy Mothers Day! Yeah, thats exactly how i'd describe it. Numb. Like, I accept it but keep waiting for it to hit me at the same time, but how can I have accepted it if i'm still waiting for it to hit me? Lol, hope that makes sense. I'm afraid I do not know Minis story to compare it, was she born with it? She's such a strong gal, you've done such a great job. Wise beyond her years! As for professional help, I was nervous about everything but God has brought so many amazing people into my life because of this, so I do give Thanks for that. These forums have been a saving grace, not to mention the people. I LOVE quotes, Thanks for those, they're now on my screen for our parking system at my office when I come and go as a pick me up. I have so much more I want to say to you, I hope we get to chat more.

-Eric48 I smoke i'm trying to quit, there's always an excuse, my longest time was 6 months of no smoking, then a bad day at work, my DX and some drinks I said EFF it and got a pack, now i'm up to 6-8 a day. Funny part, I HATE the smell of cigs! I also had never ever had any STD STI etc so I went from Nothing to HIV, lol go figure! Not to mention it was my 2nd time ever bottoming, UGH!

-Irish You're lucky I care about you, or I'd be driving to your house right now just to slap you around a bit. Also, no hijacking my thread or Aunty Ann will kick your butt for me! PS:Of COURSE I read your lab results, and we need to talk about your diet Mister, we're getting that under control (coming from me whos fat, LOL, but hey, I lost 70lbs in a year *snaps fingers and swishes hair back*) also, i'm still going with Negligent.

Thanks everyone for the posts, cheered me up, and I REALLY enjoyed speaking to you all. Feel free to post more, as stated I enjoy checking the site often, or you can PM me and i'll always give out my number so you can text me if you're feeling down, we're all here together to help, support, and irritate one another!

Update: Today I feel weird, it was around 5pm today, I took my pill this morning a little late by like 2 hours, no big deal, and then honestly I didn't think about HIV the rest of the day, the I looked at my clock and it was 5pm, and I was like woah, thats what i've been missing...Normalcy, and it's returning with a few new friends! (You guys) Its nice to have felt that today, it was refreshing.

This is the first post my mom let me post besides in my own thread, so you should feel very privileged.

Really having HIV isn't that bad once you get used to it. Yes, I was born with it. You have to get used to taking all the meds, which I have. Now that I am older, I make sure to take them at 8:22 am and pm. I take 3 pills in the morning and 2 pills at night. Then on Saturday I take an extra pill that I only take once a week. I may start another med to help me stop falling, but I haven't started that one yet and don't want to.

It has to be hard living with your family and not telling them. I kinda didn't have a choice since I was just a baby. It was the opposite for me, my parents had to tell me about it.

If you are reading my thread then you should post in it. Now that I have posted in your thread maybe you will feel OK to post in mine.

This is the first post my mom let me post besides in my own thread, so you should feel very privileged.

Really having HIV isn't that bad once you get used to it. Yes, I was born with it. You have to get used to taking all the meds, which I have. Now that I am older, I make sure to take them at 8:22 am and pm. I take 3 pills in the morning and 2 pills at night. Then on Saturday I take an extra pill that I only take once a week. I may start another med to help me stop falling, but I haven't started that one yet and don't want to.

It has to be hard living with your family and not telling them. I kinda didn't have a choice since I was just a baby. It was the opposite for me, my parents had to tell me about it.

If you are reading my thread then you should post in it. Now that I have posted in your thread maybe you will feel OK to post in mine.

Have a good day.

Mini

Thanks for posting Mini . You are a very special young woman and it helps all of us to see how strong and brave you are .

When I read Mini's post and see how she lives life to the fullest with HIV I am reminded that I can do it too .

Hi Sweet Mini! Thank you for your post, you made me giggle. Yes it's tough not telling them but someday I'll be just as brave as you. I thank god every morning for giving me another day, and I often ask him for guidance and I think he sent me to your post to help keep me on track. I see Jeff keeps a close eye on you, he's very nice too. Thanks Jeff! You're right I should post in your thread, I'll head over and do that now.

Blood results are all almost in, as always waiting on viral load. In the meantime, my CD4% dropped from 42% to 31% but my CD4 went from 592 to 732. Wtf! This is getting so confusing! I'm so unhappy about the percentage! Also, my glucose fasting was at 101, considered above normal, early signs of diabetes. What the heck! I feel scared, lost, annoyed. My doctor says if I'm not UD When VL comes back he's going to switch me off of Complera, shitty part is that I don't mind Complera, and I want to avoid the Cobicistat in Stribild. Any advice anyone?

First I like to say that I really understand your feelings cause I've kinda been going through a rollercoaster ride myself with cd4's, vl, ks, atripla side effects and beating myself up about my status.. but your numbers are quite good and headed in the right direction.. Your going to do just fine because your doing better than me and I'm fine, see?

Try not to stress out cause thats not gonna help at all.. try and remember what emerald said, he's super right and you know it.. On a personal level I've decided to let my doctors do most of the worrying, thats why they make big bucks.. And try remember what Mini said here too, isn't she awesome! You must be Matt cause she said you were her first thread she was allowed to post on and I'm the second.. so it's like were related

Hope I've helped at least a little bit and sure one of the hiv wizards are gonna give you more informative help than me.. hope you feel better.

Your cd4% is still in the normal range, cd4 count improved quite a bit, and the glucose isn't a big deal right now, your body is still adjusting to meds. I've had a fasting spike of 109, it was 75 last month. One reading doesn't mean much.

Even if you're not UD yet, it's still not a big deal, you've barely started on meds, not sure why your doc would already switch just a couple months in since you had a resistance test. Once my readings went from 290, to 90, to 60, then to 40, before finally going UD. A fast start but slow finish is annoying, but not the end of the world.

As others have said, your status IS knocking at the door of UD, and your CD4 count is essentially unchanged, despite how it looks to you.

I have always said that that count is a bit like dipping a net into a river, trying to scoop up leaves. You may get a little more or less any time you dip in. It can change within the hours of the day, and + or - 50 or so is usually regarded as no change at all.

If you ask me, you are right about where you'd be expected to be in relation to dealing with this. You've got a lot of questions and anxieties that hopefully will quell over time, and while I am eager to see you settle down your nerves and breathe a bit easier, in no way do I think this qualifies you as an AIDS sissy.

No, an AIDS sissy is one who doesn't deal with this disease, who denies it or just does not give it its due, who does not give others - especially those who faced this monster when there were precious few resources available - their due.

THAT is an AIDS sissy, and that isn't you.

Stay strong and carry on. You are in the BEST company here, in my estimation.

Ok, I was feeling better, now I got my tests and i'm back to square one. VL dropped to only 109, Doctor had told me if it wasn't less then 100 we would switch to Stribild, I really want to avoid the Cobicistat in Stribild, and i've tolerated Complera really well so why push my luck, plus unless someone can correct me, I would be eliminating a med that I wouldn't be able to take again because it will mutate to it, NO THANK YOU. I want to stay on one pill as long as possible, and then when I have to switch i'll switch to another one, in a few years....Anyways, Here's the run down again

CD4-732-NowCD4%-31%-NowVL-109-Now

CD4-592-5/21CD4%-42%-5/21VL-336- 5/21

What do you guys think, the friends and docs are sugar coating it, I just want to know if i'm done for, which I really dont think I am, but I am scared my Immune System is failing, why drop 11% but raise in the whole numbers?

Your immune system is not failing, and the meds aren't either. You are not back at square one. In 3 weeks your viral load is down by 2/3, and your cd4 count is the highest yet.

109 is really the same as 100 which was just a somewhat arbitrary number in the first place. You haven't even been on meds for 3 months yet and your viral load was over 100k when you started. Your doctor isn't actually telling you to change meds after the 109 is he? The 100 was just a goal?

I'd just keep doing what you're doing and not get another VL and cd4 for another 3 months. My 90/60/40/UD annoying numbers were all 3 months apart btw.

I really want to avoid switching. I just want him to give a bit more time, I was still in acute stage when I found out, so I think the virus is just being stubborn. I'm almost there though, I was mostly just worried about the cd4%, but everyone is just saying it was a blip. Damn blips. I will talk to my doctor no doubt about that. Man, I can't wait to be UD. You know though I do feel like an ass bitching about 732 CD4 and 32% when some people barely have or don't have 200 and 15% so I really should quit complaining. *sigh* thanks for the slap back to reality that this isn't gonna kill me guys!

Your doctor seems a little weird, lol. First promising you'll be UD in 2 months (I've yet to meet a dr that gives that sort of guarantee), then overreacting and switching meds because you have a VL of 109 at 2 months... Has he never had a patient that takes 3 or 4 or 6 or more to get UD even with no resistance issues?

With that being said I wouldn't have a problem with Stribld, seems very well tolerated, no meal requirement, etc. but I'll leave comments on taking it to those who have... That was my second preferred option after Tivicay and Truvada. Ended up going with Tivicay in order to just switch a PI with an II and leave the rest the same.

Your doctor seems a little weird, lol. First promising you'll be UD in 2 months (I've yet to meet a dr that gives that sort of guarantee), then overreacting and switching meds because you have a VL of 109 at 2 months... Has he never had a patient that takes 3 or 4 or 6 or more to get UD even with no resistance issues?

Yes, Doctor seems to be a bit off I suppose. Everything I read showed that 4-6 months was how long I should wait before considering switching he insisted by 4.5 months. Idk, i'm just lost. I'm not sure why he would tell me that being an anxious newbie only for it to not happen...Oh well, i'm not the Doctor so not much I can do but follow the rules. I hope this depression kicks itself, I want out of this funk. Night everyone.

I take Stribild, and I take it at night. If I take it in the morning, I get a little queasy. Some people don't experience this. It's nothing horrible, and when I take it at night I don't experience this. It's kept my numbers stable, vl undetectable. So, while I don't understand why your doctor switched you so early, Stribild is not the worst med you can be on. And it is also once-a-day. Cheer up! Easier said then done, I know. But, you're getting there.

Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow